Patients with long-term tracheostomies, with or without mechanical ventilation, belong to a special patient group with complex and comprehensive healthcare needs. This is due to severe, often multiple chronic conditions and functional limitations [1, 2]. Demographic and epidemiological changes aligned with advances in medical technology and the medicalisation of healthcare are leading to a steady increase of this and other patient groups with a long-term dependency on healthcare technology [1, 3, 4]. The complexity of their needs often requires the support of ongoing multifaceted, highly specialised professional health and social services spanning different sectors, settings and care levels [5, 6]. The services provided should be tailored to those needs and emphasize the integration and coordination of high quality, safe and timely care from a continuity perspective to provide the right care, in the right place, at the right time [6, 7, 8]. This often proves challenging – as the following outline of the German and international situation highlights.
An estimated 15,000 to 30,000 patients with long-term tracheostomies – mostly invasively ventilated – live in German community settings . Although reliable data are missing [10, 11], the patient group is expected to grow in line with international epidemiological trends . However, strategies to adequately address the complex and increasing demands of their specialised healthcare are lacking. Concepts that meet the patients’ complex needs are yet insufficiently described, evaluated or disseminated. Needs-orientation, quality, continuity and integration of specialised healthcare is reasonably questioned due to missing regulations, service fragmentation, often poorly qualified professionals and a mainly economically-driven rather than needs-oriented service development [12, 13]. For example, premature hospital discharges, inadequate weaning and rehabilitation opportunities or a lack of care coordination are criticised .
Although a German guideline on home mechanical ventilation provides recommendations on necessary healthcare structures, professional qualifications, discharge procedures, follow-up and healthcare monitoring [14, 15]. However, they are not mandatory, mainly focus the acute care setting  and lack overarching healthcare coordination and integration strategies. In addition, single local initiatives to improved specialised healthcare usually lack information on their elements, services and outcomes .
These challenges are not unique to the German context. Service fragmentation, regional healthcare disparities, access barriers and poor healthcare quality, as well as inconsistent professional expertise seem to affect adequate specialised healthcare in various other countries [16, 17, 18, 19, 20, 21, 22, 23, 24, 25]. However, even internationally, little is known about strategies to adequately meet the complex needs of tracheotomised patients with or without mechanical ventilation throughout the healthcare continuum.
Originating from the German situation, this scoping review asks about specific approaches or concepts reported in the international literature that are tailored to improve specialised healthcare. The aim is to map and understand the key features that characterise such approaches regarding the range, elements, processes and outcomes of the services provided. Based on this overview, conclusions will be drawn on the future development of sound concepts and healthcare strategies. These implications are particularly relevant for Germany, but also other countries facing the challenges outlined above. The results should, therefore, contribute to the international discourse on needs-based healthcare for the patient group, with special focus on appropriate cross-sectoral care, overall healthcare goals, patient pathways, provider qualification and responsibilities to avoid over- or undersupply and inappropriate healthcare.
A scoping review [26, 27] was conducted corresponding to the explorative nature of the research. According to the aim of this method to systematically search, collate and map existing knowledge on a broad field of conceptual practice, research, evidence and gaps , we summarised and mapped the so far scarcely researched field of healthcare approaches relevant to the patient group. The methodological approach, guided by the PRISMA reporting checklist for scoping reviews , followed five proposed steps of scoping studies: (a) identifying the research question, (b) identifying relevant studies, (c) study selection, (d) data charting, and (e) data collation and thematic analysis .
Search terms and strategies to identify relevant concepts and related research were developed and piloted with an initial CINAHL and PubMed (incl. MEDLINE) search, covering relevant medical, nursing and life science publications. The records obtained were screened and discussed in the research team. The search strategy was subsequently refined. Since the pilot search revealed a small body of scientific literature and to achieve comprehensiveness, the final CINAHL and PubMed search of the English literature, conducted in April 2018, was particularly extended by grey literature search (google scholar), snowball search of reference lists from all full texts included and hand-search (google) of online sources related to concepts identified. Authors were additionally contacted personally (via mail, n = 5) whenever published information was insufficient for the analysis. The search terms systematically combined using the SPICE scheme  are shown in Table 1. Evaluation and control criteria were not decisive for inclusion or exclusion and, thus, were not specified. The search was limited to the earliest publication date of 2000, assuming that previous publications would not adequately reflect current healthcare practice, since medical innovations, healthcare regulations, paradigms and with them, specialised services changed dynamically over the years in Germany and internationally.
|Domain of the SPICE scheme ||Search terms|
|Perspective (Patient group)||tracheostom*/tracheotom*/mechanic*/artific*/invasiv* AND respirat*/ventilat*|
|Intervention||inter-/multi-disciplinary, inter-/multi-professional, cross-/inter-/multi-sectoral AND care cooperat*/coordinat*/team ANDconcept/project/plan/pathway/support/service/complex intervention, case/care management, managed/integrated/continu* care|
Inclusion criteria were defined as follows. The concepts identified must a) currently be operated and b) address at least one of the following patient groups: children/adolescents or adults with complex healthcare needs due to tracheotomy with or without mechanical ventilation. Concepts must further c) address the community setting, i.e. a (nursing) home or equivalent places of residence, affect at least two different healthcare sectors and d) be multi-professionally designed, addressing the complexity of patients’ needs. No restrictions were defined for publication types and quality. A formal quality assessment of the literature was refrained from since we aimed to explore and describe the extent, range and nature of knowledge and the literature, rather than to evaluate the effectiveness of the concepts identified. However, study designs are reported and discussed.
Records were excluded if the concepts described a) do not address the patient group or b) the community settings, c) focus solely on single or mono-professional interventions (e.g. clinical, medication, medical supply or discharge management) or d) if relevant data were not available by hand search or request. Title, abstract, and full-text screening against inclusion and exclusion criteria was conducted by two researchers independently. Inconsistencies were discussed and consented within the research team.
After duplicates were removed, data from eligible publications were extracted according to a deductive approach and categorized based on a charting form developed from the taxonomy of integrated care. According to this taxonomy, healthcare integration comprises clinical, professional, organisational, systemic and functional dimensions [6, 30, 31, 32]. Approaches on integration aim to support continuity, coordination and collaboration of healthcare and have the potential to enhance the quality and outcomes of healthcare [30, 33, 34]. The taxonomy is, therefore, eligible to comprehensively describe key characteristics of concepts that aim to address the patient group’s complexity of needs. The charting form contains formal attributes of each concept (name, country, region) and the following descriptive dimensions: reported model of care, population (target patient group, territory covered), organisational characteristics (sectors involved, leading sector), professional characteristics (professions involved, operational leadership), process characteristics (key interventions, availability of standards), and management, funding and policy information. If concepts were evaluated, study characteristics (design, population, indicators, and measures), primary outcomes, the scope and extent of research activities were extracted. One reviewer (ST) drew responsible for initial data extraction, a second reviewer (ME) conducted an independent extraction for a random sample of publications (n = 6). Inconsistencies were discussed until agreement was reached. The charted data were summarised thematically by collating similar aspects and retaining differences within the above-mentioned dimensions. The results were tabulated and narratively reported.
The database search yielded 1,472 records. After removal of duplicates, screening for eligibility, grey literature/hand- search and personal requests, 76 sources representing 25 single concepts were finally included in the review. Please see Appendix 1 for the list of reviewed references. Of those records, 57 are descriptive concept reports and 19 represent research papers. Figure 1 illustrates the literature selection process. The concepts included originate from five countries: five Australian, six Canadian, 13 US-American and one concept each from France and Spain were reviewed (Table 2). The number of publications per concept ranges from one (n = 4) to nine (n = 1), with a mean of three publications (Table 3). The key characteristics of concepts, interventions and evaluations are reported in the sections below and summarised in Tables 3 and 4 (see Appendix 2).
|No.||Country||Region||Programme title||Model of care reported|
|1||AUS||Victoria||Complex Care Hub||NS|
|2||AUS||Queensland, New South Wales||Connected Care Program||Shared Care|
|3||AUS||Victoria||Victorian Respiratory Support Service (VRSS)||NS|
|4||AUS||Victoria, Tasmania, New South Wales||Tracheostomy Review and Management Service (TRAMS)||NS|
|S||CA||Ontario||Champlain Complex Care Program||Medical Home|
|6||CA||Toronto, Southern Ontario||Complex Care Program||Medical Home/Shared Care|
|7||CA||British Columbia||Provincial Respiratory Outreach Program (PROP)||NS|
|8||CA||Quebec||Quebec National Program for Home Ventilatory Assistance (NPHVA)||NS|
|9||CA||South West Ontario||Chronic Mechanical Ventilation Program||Systems Model of Integrated Care|
|10||CA||Toronto||Long-Term Ventilation Centre of Excellence (LTVCOE)||NS|
|11||ES||Barcelona||Plataforma de Respuesta Integral a Niños Crónicos con Elevada dependencia (PRINCEP)||Case Management|
|12||FR||France||Fédération Association Nationale pour le Traitement à Domicile de l’ Insuffisance Respiratoire Chronique (ANTADIR)||Statutory|
|13||USA||Michigan||Assisted Ventilation Clinic (AVC)||Case Management|
|14||USA||North Carolina||Child Health Accountable Care Collaborative (CHACC)||Medical Home|
|15||USA||Illinois||Continuity of Care Program lowa (COC)||Medical Home|
|16||USA||Michigan||Pediatric Home Ventilator Program||NS|
|17||USA||Pennsylvania||Technology Assisted Children’s Home Program (TACHP)||NS|
|18||USA||Pennsylvania||Home Ventilator Program, Children’s Hospital of Philadelphia (CHOP)||NS|
|19||USA||Wisconsin, Illinois||Special Needs Program (SNP)||Medical Home|
|20||USA||Midwest||Tracheostomy and Home Ventilator Program||NS|
|21||USA||New England||Critical Care, Anesthesia, Perioperative Extension (CAPE) and Home Ventilator Program||supplemented Medical Home|
|22||USA||Massachusetts||Pediatric Alliance for Coordinated Care (PACC)||Medical Home|
|23||USA||Indiana||Home Ventilation Program||NS|
|24||USA||Maryland||Rare and Expensive Case Management (REM) Program||Case Management|
|25||USA||Minnesota||Special Needs Program (SNP) University of Minnesota (U of M)||Shared Care, Medical Home Centre|
The majority of the concepts reviewed are built on individual approaches (Table 3): six concepts (24%) are assigned to the medical home, three (12%) apply case management, one employs a shared care approach, and two concepts combine the medical home and shared care. One concept each applies an integrated care concept (No. 9, ), or a national approach (No. 12, ). No specific model of care is reported for the remaining programmes (n = 11, 44%).
Most concepts are tailored to children and adolescents (n = 17, 72%), a quarter addresses adult patients (n = 6, 24%) and few programmes are aimed at all age groups (n = 2, 8%). The main conditions addressed are complex medical conditions/medical complexity (n = 10, 40%), including tracheotomised patients with or without mechanical ventilation. Programmes with a narrower medical scope focus technology dependency (n = 4; 16%), (non-)invasive mechanical ventilation (n = 7; 28%), tracheostomy (n = 2) or invasive ventilation only (n = 1). Specific intake criteria are reported for 18 concepts (72%), of which half (n = 10) rely on complexity or fragility criteria.
Most of the programmes cover a defined catchment area, commonly a state/provincial (n = 11; 44%) or a regional/local level (n = 6; 24%). Other programmes cover territories beyond the state-level (n = 5; 20%), with the French model (No. 12) being the only one with a national scope (missing information: n = 2). Some programmes are also located in similar regions, partially covering similar territories or patient groups (Table 2). Concepts with larger catchment areas partly operate satellite or outreach clinics (No. 3, 5, 6) or local health networks (No. 2, 12) to ensure specialised service provision near the patient’s place of residence.
Most programmes are located at specialised departments of tertiary hospitals that have responsibility (primary lead) for care coordination (n = 16, 64%, Table 3). Fewer programmes share care coordination responsibilities between both, the tertiary and primary care sector (n = 3, 12%), or entirely allocate responsibility to the public (n = 3, 12%) or community sector (n = 2, 8%). About half of the concepts utilise a cross-sectoral approach covering specialised tertiary, primary and community care (n = 13, 52%), or at least either the tertiary and community (n = 7, 36%) or the tertiary and primary sector (n = 2, 8%). Few concepts also integrate the social (n = 7, 28%) and public sector (n = 9, 36%) or the education system (n = 8, 32%).
Information on how concepts design inter-organisational collaboration within and across sectors is rare, especially regarding collaborations beyond the health system (n = 17, 68%). Formal agreements or contracts on professional/organisational responsibilities/requirements or standards are reported for five programmes (20%). (Informal) networking is common in most concepts (n = 18, 72%). Information on the types and extent of inter-organisational relationships is generally lacking. Most programmes providing information on tools supporting co-operation and coordination (n = 12, 48%), use facility-specific or public digital information systems (n = 9, 36%), single e-health instruments (e.g. shared care plans, health records, documentation templates; n = 2, 8%) or regular face-to-face meetings (12%).
All programmes have multi-professional teams, usually affiliated to the programme hosting institution. The reported staff composition is heterogeneous. At least specialised experts from medicine, nursing and social work are involved (missing information: n = 2). Primary care is also a common part of most concepts, usually realised through direct connection to the primary care physician (n = 15, 60%). Contrarily, allied health professions, consisting of occupational, physical and speech and language therapists (n = 9, 36%), dietitians (n = 7, 28%), respiratory therapists (n = 9, 36%), biomedical engineers (n = 4, 16%) or pharmacists (n = 3, 12%) are not regularly involved.
The operational lead of programmes is predominantly held by advanced nursing professionals (n = 10, 40%), or in co-operation between nursing and other professionals (n = 6, 24%). Medical (n = 4, 16%), respiratory therapist (n = 1, 4%), collaborative (n = 2, 8%) or alternating (n = 1, 4%) coordination responsibility occurs less frequently (missing information: n = 2). If primary care physicians assume coordination responsibility, they are particularly in charge of primary care coordination. The involvement of dedicated case managers (n = 6, 24%) or additional coordination personnel (e.g. patient information coordinator, technical coordinator, allied health coordinator) is rarely reported. Transparency regarding the specific staff training and qualifications is low, except for physicians and respiratory therapists.
The typical programme interventions and processes show considerable heterogeneity, but also similarities. Usually, interventions are provided on an individual basis (n = 16, 64%). About one third (n = 9, 36%) of the programmes are built upon graded approaches that systematically navigate patients to specific services according to their needs. Patients with maximum complexity receive intensive care management and dense follow-up, which is tiered down with decreasing complexity.
Programme intake is managed variably, predominantly starting during hospital stays (n = 22, 88%). Access to concepts and communication processes with patients and/or informal caregivers is managed either by case managers (n = 7, 28%), single points of contact (n = 7, 28%) or personal care coordinators (n = 4, 16%; missing information: n = 9, 36%).
The reported care coordination interventions usually comprise inpatient (including discharge), outpatient and home healthcare (n = 14, 56%), or parts of the healthcare continuum (n = 8, 32%; missing information: n = 2). Some concepts additionally coordinate transitions to adulthood (n = 2, 8%) or palliative/hospice services (n = 3, 12%). Coordination beyond the health system is less typical. If provided, those services comprise collaboration with social services (n = 7, 28%), insurance companies (n = 1, 4%), or schools/employers (n = 9, 36%).
Typical coordination tasks of the programmes concern at least, medical, nursing, social, medication and nutrition aspects. Other common components of care coordination are prescription and/or equipment management (n = 12, 48%), and/or appointment management (n = 6, 24%). Some concepts further coordinate or assist with emergency support (n = 5, 20%), resource or home safety assessments (n = 2, 8%) or transportation management (n = 1, 4%).
The primary tools applied to guide and support care coordination are care plans (n = 17, 68%) and/or needs assessments (n = 6, 24%), initially prepared prior to hospital discharge or at the time of programme enrolment, and regularly updated. Further tools are rarely reported. The information available varies and mostly refers to formal or procedural standards, especially regarding documentation (n = 9, 36%), care plans (n = 4, 16%) or needs assessments (n = 3, 12%), training and educational programmes (n = 9, 36%), the referral, medication, equipment and/or ventilation management demands (n = 7, 28%), or care coordination (n = 6, 24%).
Inpatient care coordination often directly includes specialised acute services (n = 14, 56%, e.g. respiratory monitoring, decannulation, weaning or initiation of ventilation), or refers to the co-operation with inpatient care coordinators (n = 9, 36%). Additionally, the preparation, coordination and conduct of discharges (n = 11, 44%) or transitions (n = 8, 32%) are typical coordination tasks, which are sometimes prepared by step-down unit (No. 9) or independent care ward stays (No. 18, 20).
Beyond inpatient care, regular multi-professional follow-up for ongoing needs-based support is a key feature of most programmes. Typically, they are conducted as outpatient clinic visits (n = 11, 44%) scheduled at the programme host or outreach clinics, as home visits (n = 13, 52%) or telehealth appointments (n = 4, 16%). The reported frequencies vary and are either scheduled needs-based or fixed (e.g. monthly, annual). Follow-up commonly covers specialised examinations, needs assessments, care plan updates and the monitoring and/or coordination of home care arrangements. Individual programmes aim to schedule all procedures into one single appointment (No. 13, 20, 25) to bundle specialised care and reduce patient/family efforts.
Another key element of most programmes is homecare coordination. However, the levels of monitoring and support differ, with direct participation in home healthcare being rare (n = 1). Primary care coordination is fundamental to several concepts, and is often accounted for by the primary care physician (n = 15, 60%) or shared with programme team members in charge. Some providers support the establishment and maintenance of care arrangements and contacts with providers (n = 10, 40%). Services may also include the setup, maintenance and/or monitoring of technical equipment and homecare (n = 7, 28%). Homecare is usually coordinated through home visits and/or telehealth support by multi-professional teams or single professionals. Telehealth via telephone (n = 9, 36%) or videoconferences (n = 3, 12%) is partly supported by triage systems (n = 6, 24%). Some concepts offer 24/7 support services, others during office hours, often complemented by after-hour backup. Contact frequencies vary from needs-based to fixed appointments (e.g. monthly, annual).
An additional obligatory component of most concepts (n = 18, 72%) is (structured) patient, caregiver and/or provider education and training, which usually starts during discharge or programme enrolment and is offered continuously. The interventions aim to prepare participants for homecare by providing information about, for example, health conditions and treatments, homecare safety, the handling of medical aids and devices, troubleshooting or emergency procedures.
Information on programme management is missing for nearly half of the concepts (n = 12, 48%) or incomplete. The reported management types are public (n = 4), medical (n = 2), institutional (n = 1) or multi-organisational (n = 2). Programmes with public involvement are reported to have specific healthcare and care coordination mandates.
The reported funding sources of twelve programmes (48%) are predominantly public (n = 8), sometimes supplemented by private (organisational) input (n = 3) and patient co-payments (n = 1). Exclusive private funding is exceptional (n = 1).
Underlying public policies or rules guiding programmatic approaches are partially reported (n = 10, 40%). They either refer to a state (n = 9, 36%) or the national level (No. 12) and concern programme structures, standards, integration strategies, or service/professional regulations.
A total of 19 evaluations relating to twelve concepts were identified (48%, Table 4, see Appendix 2). Two concepts (No. 6, 25) were evaluated with several studies. Information on internal or external evaluation approaches is generally lacking. The evaluation designs utilised are mostly non-experimental. Two studies each used a mixed-method or qualitative approach. Study sample sizes (patients and/or caregivers) range from a maximum of 50 subjects (n = 9), over 51–150 participants (n = 4) up to 158–1,558 participants (n = 5).
Most evaluations (n = 15, 79%) focus on healthcare outcome indicators (e.g. resource utilisation [n = 10], adverse events [n = 2]), patient/family reported outcomes (e.g. experience and/or satisfaction with healthcare or care coordination [n = 6], perceived value of interventions [n = 1], health-related quality of life [n = 3]) or economic indicators (e.g. health and/or social care costs [n = 7]). Few indicators refer to outputs (e.g. intervention characteristics [n = 4] and results [n = 1]). Process evaluations (n = 5, 26%) examine barriers, facilitators and values of collaboration or interventions. The measures utilised vary considerably.
The evaluation results indicate that concepts and interventions could contribute to decreased (un-)planned hospital and/or emergency department admissions [49, 59, 100, 104, 105, 108, 116, 119], hospital length of stay [49, 56, 59, 63, 64, 95, 100] or programme service utilisation [49, 105]. This shift towards less inpatient utilisation is reportedly associated with lower overall healthcare costs [56, 64, 95, 100, 108, 112]. In comparison, studies also show an increased utilisation of outpatient services [49, 59, 63, 100]. Further, patients and families seem to be satisfied with care continuity and coordination [63, 64, 66, 104, 105, 108, 119, 100], with service integration  or support [66, 119]. However, outcomes are not consistent between evaluations, and the methodological heterogeneity complicates the comparability of results.
Patients with long-term tracheotomies, with or without mechanical ventilation, usually require ongoing multifaceted, highly specialised professional health and social services spanning different sectors, settings and care levels [5, 6]. Since German approaches to address this complexity are widely missing and poorly reported , this scoping review explored and summarised the international research landscape on healthcare concepts that aim to provide the right care at the right time in the right place for these and comparable patients. The resulting overview should contribute responding to challenges, which are typical but not unique to the German situation. The implications outlined below are, therefore, of particular international relevance.
The systematic search of the published literature revealed a diverse set of concepts established in 5 countries that comprise specialised services across the healthcare continuum. However, the available information is heterogeneous, resulting in a generally poor reporting comprehensiveness. For example, only about 50% of concepts reported any conceptual approach. Information on inter-organisational collaboration, programme management, funding and regulation, intervention characteristics, or professional qualification is usually insufficient. Moreover, merely half of the concepts have undergone any evaluation and the methodological heterogeneity of studies challenges a synthesis of effects. Notwithstanding, the evaluation results indicate that comprehensive approaches can positively affect resource utilisation, healthcare costs, provider, patient and informal caregiver satisfaction, as well as the perceived care continuity and co-operation. These findings, together with the identified concept key elements, reflect the existing knowledge on preconditions and facilitators to needs-based healthcare for vulnerable and complex patient groups [ex. 6, 34, 35]. They may, thus, guide future (scientific) discourses and the development of sound concepts and strategies for this special patient group.
1) Application of individual conceptual frameworks tailored to a defined patient group
The most frequently reported care models are based on individual approaches (e.g. medical home, case management) that adapt interventions according to the complexity of patient’s needs. In addition, the concepts are usually sub-specialised on tracheostomized patients with or without mechanical ventilation, but generally focus on a broader population of either children/adolescents or adults with medical complexity or technology dependency.
The value of individual approaches has already been evaluated for high-need populations [8, 36, 37, 38, 39, 40] and should, therefore, be taken into account. Targeting broad patient groups may reflect similarities of demands on healthcare and care coordination between different patient groups with complex needs [1, 41]. In this case, resources, professional and coordination expertise could be tied up and healthcare provision and coordination could be adapted to specific subpopulations according to their needs. Evidence on the (dis-)advantages of focusing broad rather than narrow patient groups is currently lacking. However, according to existing recommendations for improving health care, approaches should carefully define the target patient group, taking into account the different needs of subgroups [7, 35].
2) Regional adaption
Most of the concepts operate in small geographic regions (regional or state) and are tailored to regional characteristics, healthcare structures and services. Concepts with wider catchment areas facilitate access to and coordination of specialised services through decentralised services, such as outreach teams, satellites, local centres, telehealth interventions or home visits. Despite the limited evidence on the feasibility, benefits and effectiveness of the single approaches, it has been shown that regional adaption supports the compensation of lacking local expertise, eases access to appropriate services and improves service efficiency . Therefore, future concepts should carefully be adapted to the specific regional context they are operated within.
3) Hospital-based cross-sectoral approaches
The concepts typically follow a holistic approach aiming at care continuity and integration. To achieve this, different sectors and settings are linked together. Typically implemented at highly specialised departments of tertiary hospitals, expertise is provided covering inpatient services, outpatient follow-up, home and primary care. Some concepts even reach beyond the healthcare sector and include social and educational aspects. Inter-organisational collaboration is usually built upon (in-)formal networks and supported by digital instruments.
The link to tertiary care and the cross-sectoral approach allow a continued connection and monitoring of patients to specialists, who are usually not readily available in long-term care settings . Although the specific co-operation, especially with non-healthcare parties, modes are poorly described in the literature examined, general evidence points to the crucial role of inter-organisational and cross-sectoral collaboration, clear governance, adequate responsibilities, support instruments and processes in healthcare, especially for vulnerable patient groups [6, 7, 42]. This should, therefore, be considered for the future development and implementation of specific concepts.
4) Multi-professional teams with nurse coordinators
All concepts are built upon multi-professional team-based approaches. Those specialised teams act within and beyond tertiary care and provide professionals, patients and caregivers with clinical expertise and coordination. Team composition differs, but at least medical, nursing and social work experts are involved according to the patients’ complex needs [1, 2]. Coordination responsibility is often assigned to advanced nurse professionals, partly in collaboration with other health professions. Coordinators and programme teams often keep the responsibility for the whole coordination process. The primary care physician’s crucial role in healthcare is usually acknowledged through active co-operation and primary care (coordination) responsibilities. This collaborative approach recognises the specific competencies of all professions involved and takes account of frequently lacking expertise in non-tertiary settings . It should, therefore, be carefully considered as a basic principle for the (further) development of other concepts.
5) Needs-based services combined with care coordination, homecare support and education
The concepts usually address all dimensions of healthcare across different sectors and settings, contributing to enhance care continuity and reduce fragmentation. The services include specialised, partly graded, needs-based healthcare, complemented by care coordination, homecare support and education. To what extent and how these services are provided varies considerably. Some concepts initiate services at the inpatient setting and typically attend hospital discharge and transitions. Most concepts organise, coordinate and conduct regular multi-professional follow-ups, usually held with outpatient clinic visits in varying types (face-to-face, telehealth) and frequencies. Coordination often additionally includes homecare monitoring/coordination and ongoing patient and family support.
Patient and caregiver training and education is an essential element to most concepts examined. The interventions provided aim to ensure adequate homecare, self-management and empowerment. Although feasibility and effectiveness are rarely examined, they seem to positively affect patient and family centredness, participation and empowerment. These, in turn, are crucial for high-quality healthcare [ex. 6, 7]. Eligible interventions should, therefore, be an obligatory part of considerations on conceptual developments.
Given the lack of systematic reporting and evaluation outlined above, stepping up research aimed at developing theoretical and empirical evidence on the feasibility, effectiveness and efficiency of special concepts is crucial. This knowledge – irrespective of its practice- or research-based evolution – would be important for the successful dissemination and adoption of appropriate healthcare concepts for this and other patient groups. In this regard, discourses on healthcare integration and coordination can provide frameworks and guidance to concept development or improvement. Reporting and evaluation guidelines for complex interventions [ex. 43, 44, 45] provide strategies to systematic reporting on concept development, implementation, success factors or barriers.
Based on the results of this scoping review, the following further recommendations are particularly worth considering:
Methodological limitations of this scoping review result from the restriction to the English literature. This may have fostered the exclusion of concepts published in other languages. The limitation of publication dates may have excluded current concepts, not published about during the last two decades. However, the review aimed to reflect current knowledge and practices to support the future development of concepts. This knowledge was not expected to be found in publications before the year 2000.
Search term sensitivity or specificity, non-reporting or reporting bias may also have had limiting effects. To avoid this, the search strategy was carefully reflected on within the research team. Further information could have been obtained through the systematic inclusion of unpublished knowledge, e.g. by consultation of local experts and programme leaders. Limitations based on the search restriction to two scientific databases were expected to be minor, since both cover a wide range of medical, nursing and life sciences and the initial screening revealed a small body of literature.
The findings were collated from concepts, implemented in different health systems with differing regulations, healthcare practices, requirements and regional conditions. A general overview of conceptual principles and characteristics is, therefore, challenging. Nonetheless, the results broaden the knowledge about the diversity of conceptual approaches, reveal common elements and summarise findings and knowledge gaps. This first-ever overview can, therefore, guide the future development of needs-based healthcare for tracheotomised patients with or without mechanical ventilation. The results highlight implications for future research and contribute to stimulating the international discourse on appropriate healthcare approaches healthcare, the value of existing concepts, their elements and interventions for the patient group.
Concepts addressing the complex needs of long-term tracheotomised patients with or without mechanical ventilation aim to provide needs-based healthcare across sectors and settings. This scoping review points out their structural, organisational and processual key elements that represent elementary principles of comprehensive, integrated and need-based healthcare. They should, therefore, be carefully considered for future conceptual developments and discourses in Germany and elsewhere. Yet, the review also revealed considerable heterogeneity and lacking scientific knowledge as to whether and to what extent healthcare improvements can be achieved. Thus, conclusions on how to best respond to existing challenges to appropriate healthcare are hard to draw. Future research should, therefore, particularly describe and examine conceptual key elements, their impact on healthcare processes and outcomes, and their feasibility and replicability to other contexts. Approaches should also be systematically and comprehensively reported to identify and diffuse best practice. This would decisively support the further development of reasonable approaches to needs-based healthcare for the patient group.
According to German regulation and guidelines, ethical approval of this review was not required.
The authors acknowledge support from the German Research Foundation (DFG) and the Open Access Publication Fund of Charité – Universitätsmedizin Berlin. The authors also acknowledge English editing and proofreading support from Jamie B. Smith (University of Edinburgh).
Dr. rer. medic. Jörn Kiselev, Physiotherapist/MSc in Physiotherapy, Senior Researcher/Project Management Project Präp-Go, Department of Anesthesiology and Operative Intensive Care Medicine, Campus Charité Mitte, Berlin, Germany.
Chiara Pomare, PhD Candidate, Research Assistant, Academic Tutor, Centre for Healthcare Resilience and Implementation Science, Australian Institute of Health Innovation, NSW, Australia.
This research was part of a PHD project. Preliminary work was conducted in the context of the study VELA-Regio, funded by the German Federal Association of the AOK health insurance funds (AOK-Bundesverband) and registered in the German Health Services Research Database (VfD_VELA-Regio_15_003721).
The authors have no competing interests to declare.
Michael Ewers (ME) contributed to the review design. Susanne Stark (ST) developed and conducted the review methodology, searched, charted and analyzed the data. Both authors discussed and confirmed the results. ST drafted the manuscript. ME was responsible for the critical revision of the manuscript.
Cohen E, Kuo DZ, Agrawal R, Berry JG, Bhagat SK, Simon TD, et al. Children with medical complexity: an emerging population for clinical and research initiatives. Pediatrics, 2011; 127(3): 529–38. DOI: https://doi.org/10.1542/peds.2010-0910
Manning E, Gagnon M. The complex patient: A concept clarification. Nurs Health Sci, 2017; 19(1): 13–21. DOI: https://doi.org/10.1111/nhs.12320
Carson, SS, Cox CE, Holmes GM, Howard A, Carey, TS. The changing epidemiology of mechanical ventilation: A population-based study. J Intensive Care Med, 2006; 21(3): 173–82. DOI: https://doi.org/10.1177/0885066605282784
Ten Haken I, Ben Allouch S, van Harten WH. The use of advanced medical technologies at home: A systematic review of the literature. BMC Public Health, 2018; 18(1): 284. DOI: https://doi.org/10.1186/s12889-018-5123-4
Schoen C, Osborn R, How SK, Doty MM, Peugh J. In chronic condition: Experiences of patients with complex health care needs, in eight countries, 2008. Health Affairs, 2009; 28(1): w1–16. DOI: https://doi.org/10.1377/hlthaff.28.1.w1
Goodwin N, Sonola L, Thiel V, Kodner D. Co-ordinated care for people with complex chronic conditions. Key lessons and markers for success. London: The King’s Fund; 2013 [cited 2019 Apr 19]. Available from: https://www.kingsfund.org.uk/publications/co-ordinated-care-people-complex-chronic-conditions.
World Health Organization. WHO global strategy on people-centred and integrated health services. Interim Report. 2015 [cited 2019 Aug 02]. Available from: http://apps.who.int/iris/bitstream/10665/155002/1/WHO_HIS_SDS_2015.6_eng.pdf?ua=1&ua=1.
Bodenheimer TS, Berry-Millett R. Care Management of Patients with Complex Health Care Needs. The Synthesis Project. Research synthesis report No. 19. Princeton: Robert Wood Johnson Foundation; 2009 [cited 2019 May 03]. Available from: https://www.rwjf.org/content/dam/farm/reports/issue_briefs/2009/rwjf49853.
German Interdisciplinary Association for Home Mechanical Ventilation, Federal Association of German Pneumologists, Sleep and Respiratory Medicine, German Society of Neurological Intensive Care Medicine, German Respiratory Society, German Association of General Practitioners, et al. Tracheostomy Home Care of Patients after Long Term Ventilation on the ICU – a Position Paper. Pneumologie, 2017; 71(4): 204–6. [German]. DOI: https://doi.org/10.1055/s-0043-104028
Stark S, Ewers M. Healthcare needs of vulnerable patient groups: available data and existing gaps in Germany with respect to long-term mechanical ventilation. Journal of Public Health, 2020; 28(2): 139–46. DOI: https://doi.org/10.1007/s10389-019-01056-6
Stark S, Lehmann Y, Ewers M. Intensive long-term care of tracheotomized patients with and without mechanical ventilation. Needs-based regional services. Working Paper No. 19–01. Unit Health Sciences & Didactics. Berlin: Charité –Universitätsmedizin Berlin; 2019 [cited 2019 May 24]. Available from: https://refubium.fu-berlin.de/bitstream/handle/fub188/24576/2019_Stark_etal.pdf?sequence=3&isAllowed=y. [German].
Lehmann Y, Stark S, Ewers M. Healthcare for patients with invasive mechanical ventilation from a regional perspective – VELA-Regio. Part 3: Structures and processes from the actor’s perspective. Working Paper No. 16–03. Unit Health Sciences & Didactics, Berlin: Charité – Universitätsmedizin Berlin; 2016 [cited 2019 May 24]. Available from: https://refubium.fu-berlin.de/bitstream/handle/fub188/24145/2016_Lehmann_et-al.pdf?sequence=3&isAllowed=y. [German].
Lehmann Y, Ewers M. Safety in Intensive Home Care for Ventilated Patients: Professional Players’ Perspective. Gesundheitswesen, 2020; 82(01): 75–81. [German]. DOI: https://doi.org/10.1055/a-0667-8198
German Respiratory Society. Guidelines for Non-Invasive and Invasive Home Mechanical Ventilation for Treatment of Chronic Respiratory Failure – Update 2017. 2017. [cited 2019 Jun 22]. Available from: https://www.awmf.org/uploads/tx_szleitlinien/020-008l_S2k_NIV_Nichtinvasive_invasive_Beatumung_Insuffizienz_2017-10.pdf. [German].
Randerath WJ, Kamps N, Brambring J, Gerhard F, Lorenz J, Rudolf F, et al. Recommendations for Invasive Home Mechanical Ventilation. Pneumologie, 2011; 65(2): 72–88. [German]. DOI: https://doi.org/10.1055/s-0030-1256121
Kirk S, Glendinning C. Developing services to support parents caring for a technology-dependent child at home. Child Care Health Dev, 2004; 30(3): 209–18. DOI: https://doi.org/10.1111/j.1365-2214.2004.00393.x
Laub M, Berg S, Midgren B. Home mechanical ventilation in Sweden – inequalities within a homogenous health care system. Respir Med, 2004; 98(1): 38–42. DOI: https://doi.org/10.1016/j.rmed.2003.08.005
Dybwik K, Tollåli T, Nielsen EW, Brinchmann BS. Why does the provision of home mechanical ventilation vary so widely? Chron Respir Dis, 2010; 7(2): 67–73. DOI: https://doi.org/10.1177/1479972309357497
Dybwik K, Tollali T, Nielsen EW, Brinchmann BS. “Fighting the system”: Families caring for ventilator-dependent children and adults with complex health care needs at home. BMC Health Serv Res, 2011; 11: 15. DOI: https://doi.org/10.1186/1472-6963-11-156
Edwards EA, Nixon GM. Paediatric home ventilatory support: changing milieu, proactive solutions. J Paediatr Child Health, 2013; 49(1): 13–8. DOI: https://doi.org/10.1111/jpc.12040
Garner DJ, Berlowitz DJ, Douglas J, Harkness N, Howard M, McArdle N, et al. Home mechanical ventilation in Australia and New Zealand. Eur Respir J, 2013; 41(1): 39–45. DOI: https://doi.org/10.1183/09031936.00206311
Midgren B, Olofson J, Harlid R, Dellborg C, Jacobsen E, Norregaard O. Home mechanical ventilation in Sweden, with reference to Danish experiences. Swedish Society of Chest Medicine. Respir Med, 2000; 94(2): 135–8. DOI: https://doi.org/10.1053/rmed.1999.0699
Tollefsen, E, Gulsvik A, Bakke P, Fondenes O. Prevalence of home ventilation therapy in Norway. Tidsskr Nor Laegeforen, 2009; 129(20): 2094–7. [Norwegian]. DOI: https://doi.org/10.4045/tidsskr.08.0716
Nasilowski J, Wachulski M, Trznadel W, Andrzejewski W, Migdal M, Drozd W, et al. The evolution of home mechanical ventilation in Poland between 2000 and 2010. Respir Care, 2015; 60(4): 577–85. DOI: https://doi.org/10.4187/respcare.03126
Arksey H, O’Malley L. Scoping studies: Towards a methodological framework. Int J Soc Res Methodol, 2005; 8(1): 19–32. DOI: https://doi.org/10.1080/1364557032000119616
Levac D, Colquhoun H, O’Brien KK. Scoping studies: Advancing the methodology. Implement Sci, 2010; 5: 69. DOI: https://doi.org/10.1186/1748-5908-5-69
Tricco AC, Lillie E, Zarin W, O’Brien KK, Colquhoun H, Levac D, et al. PRISMA Extension for Scoping Reviews (PRISMA-ScR): Checklist and Explanation. Ann Intern Med, 2018; 169(7): 467–473. DOI: https://doi.org/10.7326/M18-0850
Booth A. Clear and present questions: Formulating questions for evidence based practice. Library Hi Tech, 2006; 24(3): 355–68. DOI: https://doi.org/10.1108/07378830610692127
Valentijn PP, Schepman SM, Opheij W, Bruijnzeels MA. Understanding integrated care: A comprehensive conceptual framework based on the integrative functions of primary care. Int J Integr Care, 2013; 13: e010. DOI: https://doi.org/10.5334/ijic.886
Valentijn PP, Vrijhoef HJ, Ruwaard D, Boesveld I, Arends RY, Bruijnzeels MA. Towards an international taxonomy of integrated primary care: A Delphi consensus approach. BMC Fam Pract, 2015; 16: 64. DOI: https://doi.org/10.1186/s12875-015-0278-x
World Health Organization Regional Office for Europe. Integrated care models: An overview. Working document. Copenhagen: WHO; 2006 [cited 2019 Jun 05]. Available from: http://www.euro.who.int/__data/assets/pdf_file/0005/322475/Integrated-care-models-overview.pdf.
Martinez-Gonzalez NA, Berchtold, P, Ullman K, Busato A, Egger M. Integrated care programmes for adults with chronic conditions: A meta-review. Int J Qual Health Care, 2014; 26(5): 561–70. DOI: https://doi.org/10.1093/intqhc/mzu071
World Health Organization. Continuity and coordination of care. A practice brief to support implementation of the WHO Framework on integrated people-centred health services. Geneva: WHO; 2018 [cited 2019 Jun 05]. Available from: https://apps.who.int/iris/bitstream/handle/10665/274628/9789241514033-eng.pdf?sequence=1&isAllowed=y.
Pan American Health Organization. Integrated Health Service Delivery Networks. Concepts, Policy Options and a Road Map for Implementation in the Americas. Renewing Primary Health Care in the Americas No. 4. 2011 [cited 2019 Jul 12.]. Available from: http://new.paho.org/hq/dmdocuments/2011/PHC_IHSD-2011Serie4.pdf.
Øvretveit J. Does clinical coordination improve quality and save money? Volume 2: A detailed review of the evidence, 2011 [cited 2019 Jul 05]. Available from: https://www.health.org.uk/sites/default/files/DoesClinicalCoordinationImproveQualityAndSaveMoneyVol2_fullversion.pdf.
RAND Corporation. National Evaluation of the Department of Health’s Integrated Care Pilots. Final Report. Cambridge: RAND Europe; 2012 [cited 2019 Jul 05] Available from: https://www.rand.org/content/dam/rand/pubs/technical_reports/2012/RAND_TR1164.pdf.
Flanagan S, Damery S, Combes G. The effectiveness of integrated care interventions in improving patient quality of life (QoL) for patients with chronic conditions. An overview of the systematic review evidence. Health Qual Life Outcomes, 2017; 15(1): 188. DOI: https://doi.org/10.1186/s12955-017-0765-y
Baxter S, Johnson M, Chambers D, Sutton A, Goyder E, Booth A. The effects of integrated care: A systematic review of UK and international evidence. BMC Health Serv Res, 2018; 18(1): 350. DOI: https://doi.org/10.1186/s12913-018-3161-3
Altman L, Breen C, Ging J, Burrett S, Hoffmann T, Dickins E, et al. “Dealing with the Hospital has Become too Difficult for Us to Do Alone” – Developing an Integrated Care Program for Children with Medical Complexity (CMC). Int J Integr Care, 2018; 18(3): 14. DOI: https://doi.org/10.5334/ijic.3953
Zullig LL, Whitson HE, Hastings SN, Beadles C, Kravchenko J, Akushevich I, et al. A Systematic Review of Conceptual Frameworks of Medical Complexity and New Model Development. J Gen Intern Med, 2016; 31(3): 329–37. DOI: https://doi.org/10.1007/s11606-015-3512-2
Borgermans L, Marchal Y, Busetto L, Kalseth J, Kasteng F, Suija K, et al. How to Improve Integrated Care for People with Chronic Conditions: Key Findings from EU FP-7 Project INTEGRATE and Beyond. Int J Integr Care, 2017; 17(4): 7. DOI: https://doi.org/10.5334/ijic.3096
Hoffmann TC, Glasziou PP, Boutron I, Milne R, Perera R, Moher D, et al. Better reporting of interventions: template for intervention description and replication (TIDieR) checklist and guide. BMJ, 2014; 348: g1687. DOI: https://doi.org/10.1136/bmj.g1687
Ogrinc G, Davies L, Goodman D, Batalden P, Davidoff F, Stevens D. SQUIRE 2.0 (Standards for QUality Improvement Reporting Excellence): Revised publication guidelines from a detailed consensus process. BMJ Qual Saf, 2016; 25(12): 986–92. DOI: https://doi.org/10.1136/bmjqs-2015-004411
Pinnock H, Barwick M, Carpenter CR, Eldridge S, Grandes G, Griffiths CJ, et al. Standards for Reporting Implementation Studies (StaRI) Statement. BMJ, 2017; 356: i6795. DOI: https://doi.org/10.1136/bmj.i6795
Curry N, Ham C. Clinical and service integration: The route to improved outcomes. London: The King’s Fund; 2010 [cited 2019 Jul 29]. Available from: https://www.kingsfund.org.uk/sites/default/files/Clinical-and-service-integration-Natasha-Curry-Chris-Ham-22-November-2010.pdf.